Lived Experience

Lived experience

Lived experience... with dementia
14:40 - 16:00 BST | Monday 12th April 2021

Nick FoxJoin Nick Fox, Director of the UCL Dementia Research Centre (shown right) in conversation Sophie Leggett, who has lived experience of early onset Alzheimer’s disease. 

Sophie carries a mutation in the PSEN1 gene that causes early onset Alzheimer’s disease.  Having seen the disease affect her mother Sophie chose to have genetic testing to learn if she carried the same mutation.   She and many of her family have been involved in research at the Dementia Research Centre including taking part in clinical trials as part of an international collaboration - the Dominantly Inherited Alzheimer Network (DIAN). 

Nick and Sophie will discuss some of the experiences she has had of caring for someone with dementia, of living with the knowledge it is in the family, of taking part in research, and other aspects of her situation. 

There will be plenty of opportunity for audience members to also ask questions and gain insights from someone who is so personally affected by progress in neuroscience research.

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Lived experience... with Parkinson's disease
14:40 - 16:00 BST | Thursday 15th April 2021

Matt EaglesThe 2020 BNA Public Engagement of Neurosicence winner, Matt Eagles, (shown in photo, right) will talk about his experience of living with Parkinson's Disease (PD).

Matt will discuss aspects of living with this condition with Stafford Lightman, Professor of Medicine at the Univeristy of Bristol and Trustee of the BNA.  Matt was diagnosed with PD at a young age and has lived with the disease for many years, experiencing long-term use of pro-dopaminergic pharmaco-therapy and now also deep brain stimulation.

Passionate that people with Parkinson's and their care partners receive the right information at the right time, and mindful to the fact that currently Parkinson’s is seen as a disease of aging with very little hope, Matt wants to change the conversation and increase the public’s health literacy by improving awareness that you can live a full life despite the diagnosis.

Come and join Matt as he shares his unique insights, and take the opportunity to put questions to someone who is living with one of the neurodegenerative disorders that so many neuroscientists study in the lab.

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